Complex needs or complex circumstances? The life situations of parents with IDD

This is an excerpt from Marjorie Aunos’ presentation, a keynote speaker at the Virtual Disability Conference 2020:

International research reveals an over-representation of parents with intellectual disabilities (ID) in the child welfare system. Over five decades of research demonstrates that external and environmental issues, such as poverty, untreated mental health issues, domestic violence and lack of adapted and adequate support, have a far more reaching effect than the intellectual disability per se on parenting capacity. Intervention studies have clearly demonstrated that parents with ID can parent effectively or acquire the necessary skills when provided with the right supports. In seeking such support, parents with ID have good reason to be cautious. The threshold for entry into the child welfare system for parents with ID tends to be based on pervasive and entrenched pejorative assumptions and sometimes unsubstantiated concerns. Moreover, when they enter the system what is offered to them as a family is commonly not evidence based and woefully inadequate. Rather than the system taking responsibility for failing these families, it tends to project its failure onto the parents and more specifically their ID, blaming them for not engaging, lacking insight, being uncooperative and resistant and/or incapable of learning and changing. So then, should we be talking about complex needs of these families or should we focus more on the complexities of their life circumstances, their family relationships and relationships with formal services? This keynote will emphasize the ways in which parents, service providers and natural supports can work together in order to maximize self-determination of parents with ID to promote family quality of life.

Below is my presentation and commentary for the Virtual Disability Conference 2020:

Thank you, Marjorie, for your thought-provoking presentation. I would like to start off my presentation with an introduction to myself and a brief look into Ableist conceptions.

Friedreich’s Ataxia does not affect my intelligence, but many working in the disability sector act as if they do not believe this. But the reality can be highlighted by my academic qualifications, which are a double degree from Monash University, Master of Arts from Monash University and a Doctor of Philosophy from University of Melbourne. My PhD was achieved late into the progression of my disease, when I was 43 years old. Many say to me that this was a huge achievement, and I am aware of some taken-for-granted misunderstandings about Friedreich’s Ataxia. At the time of my diagnosis when I was 14, medical specialists told my parents that ‘I would not live much beyond the age of thirty’. One can only imagine their response if they were then told I would obtain a PhD! These days, I still perform research and Melbourne university gives me honorary fellow status. I have written and published over 100 articles and currently have now authored three books.

However, there are many degrading effects to be battled with, such as blindness, very poor speech, hearing impairment, poor heart and limited mobility and coordination. But in all spheres of life, I’ve always tried my best; the jury is out, but there is still some chance that my writings may create positive change.

Ableist Conceptions

Evidence suggests that identifying as to whether children receive sufficient support is often poor and based solely on the presence of the parent’s intellectual disability. It has been identified that parents with intellectual disability meet with a presumption of incompetence that too easily leads to their child being deemed to be at risk of harm.

There is a possibility that some parents with intellectual disability may disregard their child but it is not clear whether children of parents with intellectual disability are at greater risk than other children – particularly given the variation in the extent of intellectual disability and the impact it may have in a broader sense.

There are many other factors that will influence a parent with an intellectual disability’s capacity to provide adequate care to their children. Such factors are in abundance for parents with intellectual disabilities to provide care for their siblings. These problems may be instilled by unimportant issues associated with parental intellectual disabilities which are intensified by other challenges that make parenting difficult, such as poverty, unemployment, social isolation, stress, and relationship difficulties.

Such broad factors associated with the above include:

parental stress

social isolation

parental physical and mental health problems

children with physical or mental health problems, behavioural problems or disability

demographic characteristics such as parental income, education, and employment status

parents with past histories of being abused or neglected as children

parental substance abuse and

domestic or family violence

In contrast these are some of my personal thoughts from an article from Online Opinion titled ‘Itches and Scratches – Living with Disability’. I would like to draw attention to what disablement can mean to someone like me who suffers from Friedreich’s Ataxia. Firstly, I would like to draw attention to the fact I have achieved a PhD besides the degrading affects of this disease, I have continuously been told I am stupid, but the facts are out there for everybody to see. I’ve been attacked by this progressive disease, since I was first diagnosed in 1976 when I was 14. Now I am confined to a wheelchair and need daily assistance with routine transfers, hygiene and most of my daily activities. Living with a degenerative disease has broadened my thoughts concerning disablement and allowed me to focus on the need for empathetic behavior from those directly related to disability.

In 1981 I was 19. That was the year of the first United Nations International Year for Disabled People. You’d have to say that my life, with the progression of Friedreich’s Ataxia, since then has tracked the development of public policy that has, in significant ways, taken seriously the problems that disabled people have to continually and progressively confront.

In this sense mainstream society has begun to acknowledge disablement as a serious itch that needs to be carefully scratched with appropriate care, tools and resources that are outlined in just policies.

And so there are policies, legislation, a wider social commitment, education and programs now in place that show, in this country, that we have a significant society-wide compassion to assist those in great need. But, yet the itch is still not appropriately scratched.

It struck me that in both my and Majorie’s presentation we overlooked some of the overall answers. As with most disabilities there is always an alternative option, which needs to be looked at with due respect and not discarded due to stereotypes. Such as I have been pitied, conveniently verbally misunderstood, looked down on for my supposed abnormal structure and characteristics, and characterised as a loser. The social model of disability by contrast challenges this stigma and discrimination. The social model has the potential to roll back societal prejudice and misguidance and support “People with disabilities” to attempt and possibly achieve their goals free of harassment stereotypes and discrimination. I believe, the social exclusion of people with disabilities occurs because most people are still operating from the medical model of disability. They have not been exposed to the social model of disability. My successful completion of a PhD is proof of the veracity of social model of disability.

Firstly, I would like to thank my brilliant ghost write and friend Bruce Wearne. Secondly, my beautiful and talented academic support worker Dani.